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In this week’s New Yorker, I wrote about NGLY1 disorder, a new genetic disease first identified in 2012. Bertrand Might, a six-and-a-half-year-old boy who lives in Salt Lake City with his family, was the index patient, and I began reporting the story not long after Bertrand was first diagnosed just over two years ago.

I learned about Bertrand’s story after reading a blog post his father, Matt Might, had written about the family’s diagnostic odyssey. I got in touch with Matt a few days later, and since then have spoken with him and his wife, Cristina, dozens of times, usually for hour long Skype sessions. I’ve visited the Mights in their home, have met Matt’s and Cristina’s families, and have had Matt over to our house in Boston for dinner. I’ve even sung duets from Frozen with their adorable daughter, Victoria. They are truly a remarkable family. They’ve endured more than most people could imagine and somehow remain simultaneously relentless and upbeat. They also happen to be two of the kindest, most generous people you could meet. Read more.

I’m sure there’ll be lots of questions about The Panic Virus, but as the name of the feature indicates, it’ll cover pretty much everything — and some of the questions posted up there so far have to do with the future of print media (a topic I write about in this week’s New York magazine) and the common threads between my books. I’ll be answering some of the most interesting queries via Skype; the video will be posted sometime in the next week.

At the end of April, I moved my blog to the Public Library of Science’s Blog Network. Since then, I’ve been trying to figure out the best way to keep readers of this site informed about what’s going on over there. There doesn’t seem to be any elegant solution…at least that I’ve been able to figure out.

So: from now on, those folks interested in The Panic Virus Blog should go here — and for those of you who prefer using RSS readers, you can get my feed here.

Today at 1:35 pm PST, I’ll be on KOMO-Newsradio AM 1000/97.7 FM to talk about the ways in which declining vaccination rates have contributing to the situation. If you’re not in the station’s broadcast range, you can also listen online.

Earlier today, the CDC released a report about the measles outbreaks that have been occurring across the country since the beginning of the year. (Hat tip to USA Today‘s Liz Szabo for this story.) One reason measles outbreaks are so scary (and so difficult to contain) is that measles is the most infectious microbe known to man–it’s transmission rate is around 90 percent. It has also killed more children than any other disease in history.

But! I needn’t have worried: It turns out I’ve recently been conferred the status of my very own eponymous neologism: the Mnooklear attack, which, according to Urban Dictionary, is:

The type of desperate attack in which public health officials and drug companies engage when trying to hide their causal roles in the the autism epidemic. Usually involves hiring drug addicts. The main goals of Mnooklear Attacks are to protect shareholders and to keep CDC staff out of jail. Ex: Did you see the Mnooklear Attack on universally respected journalist Robert MacNeil?

Occam’s Razor it ain’t…but hey, with a name like mine, I’ll take what I can get.

My latest PLoS blog post went up on Friday; in it I discuss a comment I made back in January at American University in Washington DC. It begins:

If there’s any one thing I’ve stressed in my talks over the past three months, it’s that parents of children who believe that their children have been vaccine injured deserve compassion and understanding. (That doesn’t mean they should be pandered to or be allowed to dictate public health policy.) I’ve also said many times that I can’t pretend to know beyond any doubt how I would react if I was in their shoes.

I do, however, know what it’s like to be a parent who feels uneasy when a doctor asks you to take off your newborn’s pants so your child can be injected with a vaccine. It’s scary. I don’t know anyone in the world who likes needles or likes watching needles pierce their child’s skin. However, the fact that something is scary does not convey a license to blithely deny reality — which is why I find the actions of parents who have simply decided for themselves that vaccines and dangerous and at the same refuse to acknowledge the potential repercussions of not vaccinating on those around them to be morally repugnant. This is not a new position of mine; I wrote about it at length in a chapter of my book titled “Medical NIMBYism and Faith Based Metaphysics”…

Two days after The Panic Virus was released, I traveled to North Carolina’s Research Triangle for ScienceOnline 2011, aka #SciO11. The annual conference, which has been transformed into one of the premier science journalism events in the world, is the brainchild of Bora Zivkovic and Anton Zuiker — and it’s no exaggeration to say that it changed my life. (Thanks again, Rebecca Skloot and Ivan Oransky, for lighting a fire under my ass and making sure I attended.) Read more.

With the exception of Andrew Wakefield, there are no more infamous anti-vaccine “researchers” than Dr. Mark Geier and his son, David.

(photo by Antonio Perez, Chicago Tribune)

Last week, the Maryland State Board of Physicians suspended Mark Geier’s license to practice medicine. (As far as I can tell, this doesn’t affect Geier’s ability to practice in the other states in which he’s licensed, including California, Florida, Hawaii, Illinois, Indiana, Kentucky, Missouri, New Jersey, Virginia, and Washington.) That this move comes years too late for scores of children does not mean it is not incredibly welcome.

By obscuring the difference between anecdotes and evidence, fomenting unfounded fears, and disguising tendentious tracts as objective analyses, he might be influencing public opinion, but he’s not helping the search for verifiable truth. Read more.

As I told Dominus, I have conflicted feelings about pieces like this. On one level, I think they run the risk of simply giving more oxygen to someone who has already taken significantly more of the media’s attention than he deserves. There’s a sort of bizarro-world nature to the correlation between the attention Wakefield receives and the total scientific bankruptcy of his notions…and in a month when an entire Virginia school had to be shut down because of a whooping cough outbreak spread by non-vaccinated students and ten (and counting) children have been hospitalized in Minnesota because of a measles outbreak started by a deliberately unvaccinated child, I’m not sure the rantings of a disgraced doctor who was caught on tape joking about drawing blood from children at his son’s birthday party needs any more attention. Read more.

As you might have heard, PBS’s Newshour is in the midst of a six-part series on autism. It’s being hosted by Robert MacNeil, who returned to the show for the first time in 16 years to work on a special that he says is the first time in his career that he used his family’s personal stories to inform his reporting.

Notice that it does not say “Alison MacNeil believes that son regressed into autism after vaccines,” or “Family member featured on Newshour believes son regressed into autism after vaccines.” Instead, it invokes a trusted, even revered, newsman and links his name to the “statement” that a child’s autism was called by vaccines.

The rest of the press release contains a drum-beat of half-truths presented as fact (the U.S. has the most aggressive vaccine schedule in the world, the U.S.’s vaccine schedule is a “grand experiment”), either-or fallacies and rhetorical sleights of hand (“are we trading the elimination of childhood disease for a lifetime of disability?”), non sequiturs (“one-fifth of all U.S. children take at least one prescription medication”), and scare tactics (“I have never met a family willing to sacrifice their child for the good of the herd”).

Obviously, any group (or person) has the right to release a statement that makes all sorts of claims. The problem here is that by framing the first hour of his autism special the way he did, Robert MacNeil opened himself (and Newshour) to charges that he’s actually promoting a scientifically disproven (and dangerous) theory. I’m sure we’ll be seeing more of this in the days to come.

* SafeMinds is an acronym for Sensible Action For Ending Mercury Induced Neurological Disorders. It is a parent-advocacy group founded in the wake of fears that an ethyl-mercury based preservative used in some childhood vaccines was causing autism. That preservative, thimerosal, was shown in numerous studies not to cause autism; it was also removed from childhood vaccines a decade ago.

The fact that so many people still believe vaccines cause autism is due to many factors — but ultimately, I think it’s a failure of communication on virtually every level.

Today, Pediatrics, the journal of the American Academy of Pediatrics, unintentionally provided another example of how the medical infrastructure in this country has a lot to learn in that department. In what was intended to be a partial antidote to the embarrassing PBS Newshour series “Autism Now,”Pediatrics released 18 vaccine-safety reports for free. As far as scientific journal articles goes, they’re fairly easy to understand…but compare Pediatrics‘s point of entry: Read more.

PBS’s Newshour is currently in the middle of a multi-part special on autism. The series brings Robert MacNeil back to the show for the first time in 16 years. If it turns out to be MacNeil’s swan song, it’ll be an embarrassing coda to his career.

I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story, until Nick, because he moves me deeply. Also because I think his story can help people understand his form of autism and help me understand it better.

The rest of the hour-long program shows in spades why MacNeil would have been well-served by sticking to the principles that he’d followed for so long. Read more.

Kim Stagliano is one of the best-known figures within the anti-vaccine autism advocacy community. She can be brash, funny, and blunt. (If the National Vaccine Information Center’s Barbara Loe Fisher is the movement’s TV-ready super-ego, Stagliano is its id.) In November, she published a book titled All I Can Handle: I’m No Mother Theresa, which details her experiences raising three daughters with autism. (Jenny McCarthy wrote the introduction.) Read more.

One of the most painful chapters to write in The Panic Virus was the story of Danielle and Ralph Romaguera, whose infant daughter, Brie, died of a pertussis infection when she was less than two months old. (In January, I recorded a Vanity Fair podcast with that chapter of the book.) Whooping cough is a scary, scary disease — as the Romagueras, or the parents of any of the ten infants who died of pertussis last year in California, can attest. (Nine of those children were under six months old, which is the age at which a child following the CDC-recommended vaccine schedule would be fully vaccinated.) Read more.

I’ve been traveling a lot over the past week, which has translated into lots of activity in the real world and very little in the virtual one. Instead of a bunch of mini-posts, I’m going to do a couple of catch-all updates; this one has links to news about some of the events I did on the road, and over here you can see some recent interviews and articles about The Panic Virus.Read more.

As I said in my post detailing some of the events I’ve been involved with over the past week, I haven’t had a lot of time to update my site; as a result, here’s a catch-all post featuring some of the interviews and articles about The Panic Virus that have run recently. Read more.

There’s plenty to report about all of the above, but I feel compelled to at least briefly bow to the genius that is The Mutter Museum, a sort of cabinet of medical/anthropological curiosities housed within the College’s headquarters in downtown Philadelphia. It’s awesome. Read more.

In 2010 alone, 10 infants died of whooping cough in California, which is astounding that that is happening today. There are children that have died of Hib, diseases that I have always assumed were definitely in the past in this country. There was a measles epidemic several years ago in California, in San Diego, that cost $10 million to contain, and resulted in a quarantine of dozens of children. That meant that those parents then had to find some way to take care of those kids, either not go to work or pay for day care. So, even when you have a case like with that measles epidemic, where it’s true that children didn’t die, you had one infant that was hospitalized for a serious amount of time, and dozens of families that had to pay an enormous amount of money because of this.

Yesterday morning I was a guest on ABC Radio National’s “Late Night Live” program (audio link) in conjunction with the release of the Australian edition of The Panic Virus. (Coincidentally, I also received my copy of the AU edition yesterday afternoon.) It was an interesting program: A little more talk about 9/11 conspiracy theorists than I’m used to, but clearly vaccines were of much interest to the host and the audience.

When I got off the line and checked my email, I saw a message from David McCaffery, whose four-week-old daughter, Dana, died in March 2009 after being infected with pertussis. The McCafferys live in New South Wales, and I got to know them while working on my book (their story is included in the preface to the Australian edition). “Sad news, Seth,” David wrote, before pointing me to a story about a newborn baby in Melbourne who died last week of whooping cough. (More information about vaccine awareness efforts in Australia can be found on Dana McCaffery’s Facebook page.) Read more.

If today’s HuffPo story by David Kirby is any indication, the site will continue to run misleading and inaccurate stories about vaccines and their supposed connection to autism. Kirby is a more felicitous and intelligent writer than many of the site’s other contributors, but his conclusions are no less irresponsible or off-base. Earlier today, I unpacked a handful of the problems with Kirby’s effort in a Scientific American guest blog. Read more.

Last night, AOL finalized a deal to buy The Huffington Post for $315 million. From my perspective, the biggest news is that Arianna Huffington will, according to The New York Times, “take control of all of AOL’s editorial content as president and editor in chief of a newly created Huffington Post Media Group. The arrangement will give her oversight not only of AOL’s national, local and financial news operations, but also of the company’s other media enterprises like MapQuest and Moviefone.”

Much of the hand-wringing about Arianna’s ascension has focused on her liberal political views. (The headline on the Fox Nation website read, “AOL veers hard left, buys Huffington Post.”) I’m more worried about whether The Huffington Post‘s history of publishing baldly inaccurate stories about science and medicine will now infect the rest of AOL’s content. Read more.

Yesterday, The New York Times energy and environment blog ran a post titled “Are We Hard Wired to Doubt Science?” The central question posed by the piece — “How, in a rational society, does one understand those who reject science, a common touchstone of what is real and verifiable?” — is also the central question of my book, so it’s obviously a topic I’m very much interested in.

What struck me right off the bat was the use of the following illustration, which described “The cerebral cortex and hippocampus amygdala (in red) in a normal brain.”* The image was credited to Dr. Martha Herbert of Mass General Hospital. Read more.

I’ve been swamped the last few days: I was in North Carolina over the weekend for the truly inspiring ScienceOnline 2011 conference and since then have been trying desperately to dig out from under the mound of unfulfilled obligations that have piled up already in 2011. As a result, I have a whole mess of half-written blog posts. One day, hopefully, I’ll finish those. In the meantime, here are some links to online chats, Q/As, podcasts, and interviews that have taken place over the last few days.

On Sunday, Salon.com’s editor-in-chief, Kerry Lauerman, did something that’s far too rare in the media: He acknowledged his publication had made a mistake in judgment and he took steps to correct the damage. The piece in question was “Deadly Immunity,” an error-laced story by Robert F. Kennedy, Jr. that initially appeared in both Salon and Rolling Stone. It was filled with outright errors, embarrassing misquotes, and clumsy mischaracterizations. From Lauerman’s statement: Read more.

It was recently brought to my attention that when I initially announced the“Get a Kiss, Win a Book” contest, the comments section of the blog were, um, experiencing technical difficulties.* So! The contest has been extended for one week. Here are the basics:

Tomorrow I’ll be making a bunch of different media appearances, and many of them allow for live audience interaction. At 1 pm, Gawker will be featuring The Panic Virus as its latest Book Club selection. (An excerpt will be posted sometime in the morning, and from 1 to 2 I’ll be answered questions in the comments section.)

Earlier in the day, I’ll be on WNYC’s Brian Lehrer Show, which airs on NPR stations around the country and streams online. The segment I’ll be on is scheduled to run from 11:25 to 11:45 am.

And for those of you listening to drive-time radio bright and early, I’ll be on a number of different ABC Radio stations bright and early in the morning. Below is a list of the segments that will be aired live; all times are EST.

* This morning, I talked with CNN’s T.J. Holmes on American Morning; here’s the video.

* Also this morning, The Wall Street Journal‘s Katherine Hobson ran a Q&A with me on the paper’s health blog.

* On Sunday, I was on NPR’s Weekend “All Things Considered” with Guy Raz. Raz is exceedingly astute interviewer — but even if you have no interest in hearing me, it’s worth listening to the first several minutes of the segment, in which Raz interviews a remarkable woman named Kelly Lacek, whose story starts out The Panic Virus. Read more.

The Wall Street Journal‘s editorial page has, over the years, been refreshingly outspoken on the subject of vaccines and autism. On December 29, 2003, it published a piece titled “The Politics of Autism” that took an unusually definitive stand on an issue about which most of the media was presenting as an “on the one hand, on the other hand” debate: Read more.

This weekend, NPR’s On the Media included a segment on my book, The Panic Virus, which will officially go on sale on Tuesday (although people who pre-ordered off of Amazon have reported already receiving their copies).

Michael Shermer has devoted his life to truth-seeking and fact-finding, and his work has long been an inspiration to me. In addition to being the founder of Skeptic magazine, Skeptic.com, and The Skeptics Society and he writes a regular column for Scientific American and is a frequent blogger. The range and scope of Shermer’s work and interests is awesome, in the old-school sense of the word. (Here’s a sampling of some of the past speakers at the Skeptics Society’s lecture series at Caltech: Richard Dawkins, Leonard Mlodinow, Barbara Ehrenreich, Carl Zimmer, Alison Gopnik, Stephen Jay Gould, Stephen Pinker, and Daniel Dennett.)

Shermer reviewed The Panic Virus in the January 8 edition of The Wall Street Journal. It is an incredibly generous and humbling review: Read more.

Yesterday, the news broke that the British Medical Journal was running a series of stories that labeled Andrew Wakefield’s infamous 1998 Lancet study that posited a link between the MMR vaccine and autism an “elaborate fraud.” Dr. Fiona Godlee, the BMJ‘s editor-in-chief, compared the MMR scare to the Piltdown man hoax, in which a series of fossilized remains found near East Sussex, England were claimed to be a previously unrecognized early ancestor of humankind. (I’m hoping that has more resonance in the UK than it does in the US, because when I first read that I had absolutely no recollection of the whole Piltdown mess.)

As someone who has spent two years doing nothing but looking into various vaccine scares, I found the way these latest revelations, which were based on reporting by Brian Deer, were packaged to be problematic. Read more.

On January 24 at 7pm, I’ll be doing a reading at the Harvard Book Store, in Harvard Square — which is particularly poignant for me not only because it’s been my favorite bookstore for the past twenty years but because my brief employment there back in 1998 was a bit, um turbulent. (I hope to see all you Boston folk there.)

Like other persistent untruths—the belief that Obama is a Muslim, say—the endurance of these vaccine scares is due to multiple, interconnected causes. The Internet, where no view is too outrageous to masquerade as fact, has played a role, as has the media’s habit of giving every story “two sides” long after one has been discredited. There’s also politicians’ instinct to pander to their most vocal and strident constituents, and public officials’ ineptitude at communicating with the public.

(January 13, 2011: The contest has been extended for another week — see all the details here.)

Sheril Kirshenenbaum’s The Science of Kissing — a great book with arguably the cover/title of the year — was published today. For anyone who has ever made snap judgments based on the books people are reading on the train/subway/bus/plane — well, think of all the possibilities if someone saw you reading this: Read more.

As you might have heard, Oprah Winfrey launched her own TV network on New Year’s Day. OWN (the initials stand for Oprah Winfrey Network) took over Discovery Health Channel’s slot with cable providers, and will offer around-the-clock programming designed to teach viewers how to “live your best life.” As Winfrey recently said in the pages of O, her glossy magazine, “My goal in life is to live out the truest expression of myself as a human being.” Read more.

Seth, only a very small percentage of formula used is not the “standard” variety. Hypoallergenic formula is almost always a last resort. Infant formula increases the incidence of many childhood illnesses and this Pediatrics story adds to that verified list.

I’m assuming this is true — I have no idea what the ratio of hypoallergenic to standard infant formula is, but I’m guessing it’s small — but it is also completely beside the point. Read more.

In his blog, the Sports Illustrated writer and all-around genius/great guy Joe Posnanski frequently refers to his commenters as “brilliant readers.” His point is that they often prompt him to look at issues from a different perspective, which improves his ability to create a thought-provoking blog, which prompts more reader comments–you get the idea.

My hope is that the same type of community can be established here. That will undoubtedly be a challenge. Having written a book about baseball, I know sports are a topic about which people can get very emotional…but it’s nothing compared to child-rearing/health-care/vaccine safety/autism. I’ve thought a lot about the best way to oversee/moderate comments — more on that later — but for now, I’m incredibly happy to see that there is already some real dialogue going on. Read more.

Earlier this morning, Jay Gordon, who is perhaps best known as the pediatrician who supported Jenny McCarthy in her belief that the MMR vaccine had contributed to her son’s autism, posted the following tweet: Read more.

Earlier this morning, Jenny McCarthy’s re-tweeted to her 225,354 followers the following message: “Pertussis vaccine (whooping cough) legal cause of epilepsy/death of boy. This will NOT make news during ‘outbreaks’ http://bit.ly/i20hmR.” That link brings the reader to a post on Age of Autism (one of whose editors was the source of the initial post, which has already been re-tweeted 50 times), which states unequivocally that a young boy named Elias Tembenis “died as a result of a reaction to his DTaP (P = Pertussis/Whooping Cough) vaccination.” Before I get into the multiple problems with such a statement, here’s some background: Read more.

Last week, an old high school friend of mine named Krister Johnson posted about my book on his Facebook wall. The result has been an interesting discussion–one of the first comments was, “Except that the way in which vaccines are given today [i.e. the volume within a small time frame – not to mention the ones that shouldn’t be given] is directly related to autism…”

To say the NFL’s institutional response to the risks of repeated head trauma has been poor would be a vast understatement. It’s a subject I wrote about for The Boston Globe back in 2007. (The reporter who has been driving this coverage for years is The New York Times‘s Alan Schwarz. It’s not an exaggeration to say that his investigative work and relentless pursuit of this story has done as much or more to influence the national discourse on the subject as anything. For my money, Schwarz’s traumatic brain injury (TBI) reporting has made him one of the country’s best medical reporters. But I digress.)

One factor in football’s foot-dragging on this has been a shocking approach to the problem by the players union. Read more.

There hasn’t been a whole lot written in the American press about the story of an unidentified German doctor who walked out of surgery when he saw a swastika on the arm of his already anesthetized patient. (According to The Telegraph‘s translation of an article in the German daily Suddeutsche Zeitung, the doctor said, “I can’t operate on this man. I am Jewish.” The BMJ‘s translation has a slightly more poetic ring to it–“I cannot operate on this man. I am a Jew”–but their piece is also stuck behind a typically absurd medical journal paywall.)

The unidentified surgeon found a colleague to take his place, and while he was the subject of a lot of public criticism, he was not reprimanded. Read more.

The past several years have seen a dramatic rise in the number of pertussis (more commonly known as whooping cough) cases in areas around the country. California has been especially hard hit: Already this year, ten children there have died after being infected. Nine of them were under two months old, the age at which the first dose of the pertussis vaccine is administered. (According to the California Department of Public Health (pdf), there were 7,297 pertussis infections in the state through November 30. That’s the most number of cases since 1947, which was before the pertussis vaccine was put into widespread use.)

One side effect of these outbreaks has been increased awareness that teenagers and adults need regular pertussis boosters–and that even those fully people who are fully vaccinated are not necessarily immune. (No vaccine is 100 percent effective. There’ll be more on that in a later post.) Recently, a pair of fully vaccinated teenagers in Washington, DC were diagnosed with whooping cough. As a result, the parents of children at the Sidwell Friends School–including, I assume, President and Mrs. Obama, whose two daughters are enrolled there–received the following e-mail: Read more.

One of the unexpected bonuses of writingThe Panic Viruswas working with Kevin Hartnett, an incredibly talented writer who helped me with just about every facet of my book. For a couple of years now, Kevin has been working with the online books/arts/culture/etc magazine The Millions; this year, he asked me to contribute one of the site’s “Year in Reading” features.

* The Boston Globe‘s brilliant Hiawatha Bray pointed out that I’d initially given Wolfe authorship over his creator. (Thanks, Hiawatha.) That also gets to several things I should have noted earlier: My policy will be to always indicate where I have made corrections to initial posts; if I’m lucky — and this indicates that I will be — I’ll have readers that are many times smarter than I am; I’ll depend on said readers to let me know when I’ve screwed up; and the comments policy is still a work in progress. Right now, I need to approve all comments. My intention is not to limit debate or discussion, but to keep things civil…and to limit spam pitches for bodily enhancements and illegal pharmaceuticals. I’ll write more about this as it evolves.